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Livin' with it:
A New Paranoia
by Tom Setto
“Hey, Ken, is that guy
still following you?” I was kind of hoping no one would
bring it up, but Jerome couldn’t resist. You see, Ken
has been mentioning this mystery man since he read The New
York Times article about how insurance companies are hiring
private investigators to follow people living with AIDS who
are receiving long-term disability benefits. I was looking
forward to our weekly breakfast and not having to hear about
his conspiracy theory.
“You guys think
I’m going crazy, but I see him sitting in his car outside
my building almost every day. It can’t be a coincidence.
I really worry that they are trying to take away my benefits,
that they’re trying to find some evidence to force me
back to work. The forms they have me fill out every year and
the ones my doctor has to fill out are unbelievable.”
“Really? What
do they want to know? And would it be so bad to go back to
work?” Joey asked.
“Well, they want
to know how much I can lift and for how long I can carry it,
whether I can still bend and kneel and crawl, stuff like that.”
“I hear you have
no problem bending, kneeling, and crawling,” Miguel interrupted,
“at least that’s what your date last week said.”
“I’m not
too old for that, but I think I’m too old to have to
start over. I’d love to be able to go back to work. Who
would hire a guy with who hasn’t worked for six years?
How do I explain the time off? ‘Oh, by the way, I have
AIDS and I got so sick I couldn’t work, but I’m
feeling better now so how about a job?’ That would get
my foot in the door.”
“You sell yourself
short,” Jerome answered. “You make yourself out
to be an old fart who can’t do anything anymore.”
“Sure, I feel
great now but what if I go back to work and I get sick eight
months later and have to quit? What if I can’t get back
into ADAP? My Social Security would drop because my base income
would be less and I’d have already given up the long-term
disability. I think I have the right to be paranoid.”
“Calm down,”
Gary said, “you’re preaching to the choir here,
but you have to stop being so Oliver Stone. I doubt very much
if that guy is watching you, maybe he’s working for that
show Cheaters and trying to catch some cheating boyfriend.
How well did you know that guy you went out with last week?”
“Why all the abuse
about my date, guys? I may be an old fart, Jerome, but I ain’t
dead.”
“I used to worry
constantly about dying,” I jumped in. “Now I worry
that I might get sick enough that I need to take a pill for
it. It’s tough not having prescription drug coverage.
You take that for granted when you’re working and have
health insurance. With all the financial problems I hear that
ADAP’s are having, I’d be afraid to get into the
HMO that Medicare offers. I agree with Ken, I worry that I
might not be able to get back into the program.”
“You know what
I worry about?” Gary said. “I worry about how my
body is changing. I was never the best looking guy in the
bars, but I didn’t scare children either. I don’t
think my legs can get bonier or my ass get any flatter. I
worry about growing a buffalo hump and how my belly is getting
bigger even though I keep doing more crunches. I worry about
watching my cheeks sink into my face. I never thought in a
million years that I’d ever think about plastic surgery
but I am. This disease is making me paranoid in ways I never
was before.”
Miguel added his fears. “I
worry about getting KS again. I look at my body everyday.
Each time I see a new mark I get obsessed with it. I watch
it constantly to see if it gets any bigger or darker. I don’t
know if I could go through the chemo again. What is worse,
though, is the embarrassment of having those marks all over
you and having people stare at you. I couldn’t stand
to see people whispering around me. I was so paranoid that
they were talking about me. I hated leaving the house, hated
looking in a mirror. I don’t think I could go through
that again.”
“My fears are
a little different from you all,” Jerome said. “I
moved from the neighborhood I grew up in and left the church
I’d gone to all my life because I was worried that folks
would find out my secret. I’m sure you know how the ladies
can talk. Not only am I Black and gay, but I am Black and
gay and HIV positive.”
“I thought you
moved in with me because you love me,” Miguel asked.
“And you can always come to church with me.”
“First of all,
you’re Catholic. Enough said there. And I did move in
with you because I love you. I never really talk about how
Black people look at AIDS. I just don’t think you guys
would really relate. Maybe some day if you all want we’ll
really get into it. When you’re ready and when I’m
ready.”
“I think I speak
for us all when I say that we’d love to talk about it
with you and that we’re all here for you,” Ken said.
“It’s amazing that after over 20 years we still
have to worry about how others think about us, our condition,
and how they treat us. We should have to worry about our health
and staying alive, not how we are going to survive the system
and get beyond people’s negative attitudes.”
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